A Missouri mother is organizing a fundraiser to help find a cure for the rare brain disease that took away her 4-year-old son’s ability to walk, talk and eat.
Bethany Jones said her son, Isaiah, who is now almost 5 years old, began walking late at about 15 months old, WDAF-TV reported. She grew even more worried when Isaiah began struggling to lift himself up.
“He would just fall on his face, he would just fall straight forward,” said Jones, adding that Isaiah’s walk became wobbly.
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Isaiah was diagnosed with Vanishing White Matter, a disease in a group of genetic disorders called leukodystrophies. It causes the white matter in the brain to disappear. Isaiah lost his ability to walk, talk and eat by mouth.
But that may not even be the worse part. Jones said sometimes when Isaiah wakes up in the middle of the night, he doesn’t remember who she is.
“It's just hard to understand because he's so little,” Jones said. “It confuses you, too.”
Jones said her son is just one of 129 people in the world living with Vanishing White Matter. Most people live only about three years after diagnosis.
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“We have pretty much accepted that Isaiah won't see a cure in his lifetime,” Jones told the news station.
In an effort to raise awareness and help find a cure, Jones organized an event called “Isaiah’s Walk to Cure VWM.” The event will take place on Oct. 3 at Memorial Park in Raymore, Missouri, and all proceeds will go to research being done at the University of Tel Aviv in Israel.
Jones said whenever she feels stressed or overwhelmed, she just looks at Isaiah.
“Why am I being upset about this?” Jones said. “He's the one going through it and he's still smiling and he's still happy.”
Last November, the Make A Wish Foundation teamed up with a Kansas City fire department to make Isaiah’s dream of being a firefighter come true for a day, NY Daily News reported. Jones said her son was infatuated with the profession and he was given his very own honorary firefighting helmet.